Gwen White is conquering her battle against rare disease

Monday

She was diagnosed with Juvenile Dermatomyositis a autoimmune disease that only affects 2 to 3 children per million each year.

A little over a year ago, 9-year-old Gwen White's eyes were devoid of hope.

There was despair there. And fatigue.

In the months leading up to White's diagnosis of Juvenile Dermatomyositis, fatigue defined White's existence. The disease made her so weak she couldn't lift her arms. She couldn't run in gym class. Some days, she was physically unable to get out of bed without help.

A rare autoimmune disease that many doctors have trouble identifying, JDM usually crops up in childhood. It causes the body’s immune system to attack the skin tissue and muscles, weakening them to the point of near uselessness.

White was diagnosed with JDM in May of 2017, and the disease is so rare it only affects 2 to 3 children per million every year. Once the disease was finally identified — a months-long nightmare of repeated doctor visits and misdiagnosis — the treatment started. And Gwen's life began to change.

For the first time since the debacle began, her eyes had regained that sparkle of hope. By November of last year, she was well on her road to recovery, back in the classroom, and back on the playground.

"The medicine is working, and it makes the disease non-active" said White's mother, Kerstin Quattromini.

Though White was feeling much better by the end of last year, she had gained weight from the regular steroid treatments. The steroids also caused her face to swell into a moon shape, which isn't that unusual.

"She had good days and bad days. More good days now," Quattromini said.

Still, White was happy. These days, she's even happier.

Her face is no longer swollen. She can fit into her old jeans. Her energy level is nearly equivalent to most children her age.

Best of all, she's officially in medical remission. The medication and monthly infusions that hold back the disease will continue, and currently there is no cure for JDM. But her days of physical therapy are over, and the treatments will continually be lessened over the coming months.

"Now I'm able to run around more and I'm able to do a lot more," White said.

White became close to her trainer during physical therapy, and is sad her one-on-one time with him is over. But she still plans on going back for regular exercises, and there's a million other kid things she's rediscovering.

Simple things, like rollerskating.

"It's been a year-and-a-half since she could rollerskate, and we went to Kenny's Roller Ranch this weekend," said Quattromini. "It was so neat, to see her rollerskate again. We're just so excited and proud she can do the things she wants to do."

What White misses more than anything, though, is playing soccer.

"I want to play soccer next fall," she said.

At the rate White is progressing, her mother believes that's an achievable goal. White has a lot of goals, including going into the medical field. That decision was inspired by her admiration of the health professionals who took care of her for so long.

Right now, though, White's goal is much simpler. She just wants to be a kid.